In a study of the range of treatments being employed for young children with autism and other developmental delays, UC Davis MIND Institute researchers have found that families often use complementary and alternative medicine (CAM) treatments and that the most frequent users of both conventional and complementary approaches are those with higher levels of parental education and income.
There is no Food and Drug Administration-approved medical treatment for the core symptoms of autism spectrum disorder, a lifelong neurodevelopmental condition whose hallmarks are deficits in social relatedness, repetitive thoughts and behaviors and, often, intellectual disability.
In the search for treatments to help their children, families may turn to unconventional approaches such as mind-body medicine (e.g. meditation or prayer), homeopathic remedies, probiotics, alternative diets or more invasive therapies such as vitamin B-12 injections, intravenous immunoglobulin or chelation therapy — some of which carry significant risks.
The research is published online today in the Journal of Behavioral and Developmental Pediatrics. It was led by Robin Hansen, director of the Center for Excellence in Developmental Disabilities at the MIND Institute and chief of the Division of Developmental Behavioral Pediatrics in the UC Davis School of Medicine.
“In our Northern California study population, it does not appear that families use complementary and alternative treatments due to the lack of availability of conventional services, as has been suggested by other research,” Hansen said. “Rather, they use the treatments in addition to conventional approaches.”
The cause or causes of most neurodevelopmental disorders are not known, and the conditions have no cure. Many children suffer from a wide array of associated symptoms that may not be directly associated with their condition and that make their daily lives and those of their families stressful. Such symptoms include irritability, hyperactivity, gastrointestinal problems and sleep disorders.
The study included nearly 600 diverse children between 2 and 5 years with autism and developmental delay who were enrolled in the Childhood Autism Risk from Genetics and the Environment (CHARGE) study. Of the participants, 453 were diagnosed with autism and 125 were diagnosed with developmental delay.
CAM use was more common among children with autism than children diagnosed with other types of developmental delay, 40 percent versus 30 percent respectively. Nearly 7 percent of children with autism were on the gluten-free/casein-free diet, particularly children with frequent gastrointestinal problems.
“We were pleased to find that most families utilizing CAM therapies were choosing ones that were low risk," said Kathleen Angkustsiri, assistant professor of developmental and behavioral pediatrics and a study co-author.
However, a small but statistically significant number — about 9 percent — were found to use alternative treatments classified by the study as potentially unsafe, invasive or unproven, such as antifungal medications, chelation therapy and vitamin B-12 injections.
“Our study suggests that pediatricians and other providers need to ask about CAM use in the context of providing care for children with autism and other developmental disorders, and take a more active role in helping families make decisions about treatment options based on available information related to potential benefits and risks,” said Roger Scott Akins, lead author and a former postdoctoral fellow at the MIND Institute, who now is chairman of the Division of Neurodevelopmental Pediatrics at Naval Medical Center Portsmouth, Va.
Irva Hertz-Picciotto, professor of public health sciences and principal investigator for the CHARGE study, said the research supports the emergent need for identifying validated treatments for neurodevelopmental conditions.
"These findings emphasize the enormous and urgent need for effective treatments and for rigorous research that can identify them and verify their effectiveness and safety,” Hertz-Picciotto said. “Of course it is reasonable for parents to keep searching for ways to help their children, when there are few effective treatments and none that can help every child."
Paula Krakowiak of UC Davis is also an author of the study.
The study was funded by the National Institute of Environmental Health Sciences grants P01 ES11269 and R01 ES015359, the U.S. Environmental Protection Agency Science to Achieve Results (STAR) program grants R833292 and R829388.